AANEM Foundation News Express

Sean Dorney: Grappling with ALS in His Golden Years

4/5/2019

Many working adults fantasize about their retirement years, when their children are grown, they can stop earning an income, and the biggest worry becomes how to spend their newfound free time. One doesn’t expect to spend their “Golden Years” with a debilitating neuromuscular disease, but that’s exactly what happened to Sean Dorney, an award-winning journalist from Australia.

In 2016, at age 64, Sean began to realize he was slowing down.

“I used to play social touch football 2 mornings a week and found running harder. In bare feet, I was occasionally tripping and noticed that the big toe on my left foot was drooping,” said Sean. “When I went to my general practitioner, he thought it was a tendon issue and referred me to a foot specialist. That doctor carried out a few tests and said it was not a bone or tendon issue, but a nerve and muscle issue, and he referred me to a neurologist.

“I was ultimately referred to Dr. Robert Henderson at the Wesley Hospital in Brisbane, Queensland, Australia. Dr. Henderson initially diagnosed my condition as multifocal motor neuropathy. He suggested I meet with Dr. Matthew Kiernan, the Co-Director of the Mind and Brain Centre at the University of New South Wales. Dr. Kiernan carried out some tests with a machine that sent magnetic and electrical impulses through my body. When he was done, he diagnosed me with motor neuron disease (MND) [or amyotrophic lateral sclerosis, as it’s known in America].”

The news was devastating for Sean and his family.

“I was told I probably had 3 years to live. My brother, who is a doctor in Sydney, accompanied me and following the diagnosis, we had a bit of a hug. I then rang my wife, Pauline, in Brisbane and I broke down on the telephone. Pauline says she put down the phone and had a good cry herself,” recounted Sean. “It is quite confronting to hear your own death sentence.”

When interviewed for a television piece the Australian Broadcasting Corporation created about Sean, Dr. Henderson said, “For most people, MND [or ALS] is quite quickly progressive to death over 2 to 3 years from respiratory failure. The trouble is our bodies have this big reserve of strength and you don’t see any changes until you sort of hit the edge of the cliff.”

Sean – a man who worked for the Australian Broadcasting Corporation traveling around the Pacific Islands as a foreign news correspondent for 40 years and was an active golfer and gym-goer – says that frustration is his biggest issue.

“So many simple things have now become frustratingly difficult. I have given up driving a vehicle because it has become too dangerous. To lift my foot from the accelerator to the brake required me putting my hand down to help lift my knee. I still write a bit, but now it is difficult to type. I used to be a 10-fingered typist, but now I am down to using just 2 fingers, 1 from each hand and each stroke required an effort lifting each shoulder to get my hands up over the keyboard,” explained Sean.

“I can no longer mow the lawn. Climbing stairs has become a real struggle. My hands have become so weak that Pauline cuts up my food. Pauline also needs to help dress me.”

Despite these setbacks, Sean and Pauline still lead a very active social life, and he says, he is fortunate to have a wonderful support system of friends, family and neighbors surrounding him.

“I have had marvelous support from my family. Pauline has become my principle support, although my daughter, 41, who lives with us has been extremely helpful. She is the one who picks me up if I have a fall. And each day, she prepares protein and vitamin drinks for me. We have a married son and he, his wife and our 3 grandchildren (who all live just 20 minutes away) have been wonderful in their care and support. We are also extremely lucky to live in a neighborhood where our immediate neighbors are amongst our closest and best friends. One even mows our lawn.”

Sean and Pauline have also received support from an organization called MND and Me.

“It has provided both me and my wife with a lot of support. MND and Me runs support sessions for the partners of MND sufferers, so we have met quite a number of people in a similar situation to ours,” he explained.

To treat his MND/ALS, Sean regularly receives an infusion of a blood product, Privigen, which takes about 4 hours to complete each time. He also takes a magnesium tablet at night to combat muscle cramps. Every 3 months, Sean sees Dr. Henderson to complete strength tests, have his lung capacity reviewed, and discuss how he’s coping.

Sean says MND/ALS is a “rotten thing to have.” He shares his story because he believes the more publicity MND/ALS receives, the more likely it is that funds will be raised for research.

“There is no cure yet for MND/ALS, so continued scientific research is essential,” said Sean. “This is a cruel disease which robs people of their agility, their strength, their dignity and finally, their life. Can you please give us hope?”

The mission of the AANEM Foundation is to provide funds to the next generation of researchers to advance the science and practice of neuromuscular and electrodiagnostic medicine. Your donation helps provide patients like Sean with hope for a cure. Even a small donation can make a big difference.

As Sean says, “A cure might be too late for me, but if somebody afflicted with this horrible disease can be cured in the future, then that’s a goal worth aiming for.”